Decision-making about fertility preservation—qualitative data on young cancer patients’ attitudes and needs

Abstract

The aim of the study was to get deeper insight into the significance of fertility in cancer patients, their attitude towards fertility preservation (FP), decisional conflicts, and patient's needs in the decision-making process. Focus groups with 12 female cancer survivors were held and revealed that the significance of fertility was high and attitude towards FP positive. Religious and ethical reservations were not negligible. Standardized decision aids were considered helpful. More support is highly in demand and specific tools would be beneficial.

A review of factors affecting patient fertility preservation discussions & decision-making from the perspectives of patients and providers

“…Although survival was patients’ primary priority (Crawshaw et al, ; Ehrbar et al, ; Gorman et al, ; Keim‐Malpass et al, ; Komatsu et al, ; Lee et al, ; Peddie et al, ; Penrose et al, ; Snyder & Tate, ; Wilkes et al, ; Yee, Abrol, et al, ), fertility, and correspondingly, the desire and hope of being a parent after cancer were also important to women (Ehrbar et al, ; Hershberger et al, ; Niemasik et al, ; Penrose et al, ). Fertility was perceived as a component of femininity and central to a women's identity (Ehrbar et al, ; Ussher et al, ). Women also expressed apprehension about success rates of FP, effects of FP technologies on the health of future children, vertical transmission of cancer genes and the potential for cancer recurrence (Ehrbar et al, ; Gorman et al, ; Hershberger et al, ; Komatsu et al, ; Niemasik et al, ; Wilkes et al, ).…”

“…Lack of FP‐related educational resources (King, Quinn, Vadaparampil, Gwede, et al, ; Quinn & Vadaparampil, ; Quinn et al, ; Quinn, Vadaparampil, King, et al, ; Vadaparampil et al, ), time (Ehrbar et al, ; Hershberger et al, ), accessibility to clinics (Hershberger et al, ; King, Quinn, Vadaparampil, Gwede, et al, ; Quinn, Vadaparampil, King, et al, ), costs in regions without FP coverage, (Gorman et al, ; King, Quinn, Vadaparampil, Gwede, et al, ; King, Quinn, Vadaparampil, Miree, et al, ; Niemasik et al, ; Quinn & Vadaparampil, ; Quinn et al, ; Quinn, Vadaparampil, King, et al, ; Snyder & Tate, ; Vadaparampil et al, ), age (King, Quinn, Vadaparampil, Gwede, et al, ; Peddie et al, ), marital/parent status (Corney & Swinglehurst, ; King, Quinn, Vadaparampil, Miree, et al, ; Lee et al, ; Snyder & Tate, ) and culture/religion (Ehrbar et al, ; Quinn & Vadaparampil, ; Quinn, Vadaparampil, King, et al, ; Vadaparampil et al, ) were identified as additional factors posing challenges to FP discussions and decision‐making. Studies reported that oncologists found FP discussions awkward in part because they had no resources to refer to, and because available resources were inappropriate for some patient population (Quinn & Vadaparampil, ; Vadaparampil et al, ).…”

“…Women without partners felt their concerns were not adequately addressed during FP discussions (Corney & Swinglehurst, ; Niemasik et al, ). Finally, cultural and religious beliefs played a role in FP discussions (Ehrbar et al, ; Quinn & Vadaparampil, ; Quinn, Vadaparampil, King, et al, ; Vadaparampil et al, ).…”

“…All included studies were published after 2007. Twenty-six studies used a qualitative design (Armuand, Wettergren, Rodriguez-Wallberg, & Lampic, 2015;Corney & Swinglehurst, 2014;Crawshaw, Glaser, Hale, & Sloper, 2009;Ehrbar et al, 2016;Garvelink et al, 2013;Hershberger, Finnegan, Altfeld, Lake, & Hirshfeld-Cytron, 2013;Hershberger, Sipsma, Finnegan, & Hirshfeld-Cytron, 2016;Keim-Malpass et al, 2013;King, Quinn, Vadaparampil, Gwede, et al, 2008a;King, Quinn, Vadaparampil, Miree, et al, 2008b;Kirkman et al, 2013Kirkman et al, , 2014Komatsu et al, 2014;Lee et al, 2011;Peddie et al, 2012;Penrose, Beatty, Mattiske, & Koczwara, 2012;Quinn et al, 2007;Quinn, Vadaparampil, King, et al, 2009;Russell, Galvin, Harper, & Clayman, 2016;Snyder & Tate, 2013;Snyder, Thazin, Pearse, & Moinuddin, 2010;Ussher, Cummings, Dryden, & Perz, 2016;Vadaparampil, Quinn, King, Wilson, & Nieder, 2008;Wilkes, Coulson, Crosland, Rubin, & Stewart, 2010) and three used a survey design with open-ended questions (Hill et al, 2012;King, Quinn, Vadaparampil, Gwede, et al, 2008a;Niemasik et al, 2012; Table 1). The included studies variously examined patients and providers' attitudes, experiences and perspectives, communication practices, fertility concerns, referrals, counselling/information provision, FP decision-making and barriers and facilitators.…”

“…The included studies variously examined patients and providers' attitudes, experiences and perspectives, communication practices, fertility concerns, referrals, counselling/information provision, FP decision-making and barriers and facilitators. Fourteen studies included participants with mixed types of cancers (Armuand et al, 2015;Crawshaw et al, 2009;Ehrbar et al, 2016;Garvelink et al, 2013;Gorman, Bailey, Pierce, & Su, 2012;Hershberger et al, 2013Hershberger et al, , 2016Keim-Malpass et al, 2013;Niemasik et al, 2012;Peddie et al, 2012;Penrose et al, 2012;Russell et al, 2016;Wilkes et al, 2010;Yee, Abrol, McDonald, Tonelli, & Liu, 2012), seven included breast cancer survivors (Corney & Swinglehurst, 2014;Hill et al, 2012;Kirkman et al, 2013Kirkman et al, , 2014Lee et al, 2011;Snyder & Tate, 2013;Snyder et al, 2010) and one included cervical cancer survivors (Komatsu et al, 2014). Studies examining providers included medical oncologists, hematologists, surgeons, obstetricians/gynaecologists and oncology nurses and social workers (King, Quinn, Vadaparampil, Gwede, et al, 2008a;King, Quinn, Vadaparampil, Miree, et al, 2008b;Peddie et al, 2012;Quinn et al, 2007;Quinn, Vadaparampil, King, et al, 2009;Ussher et al, 2016;Vadaparampil et al, 2008).…”